Parenting A Child With Down Syndrome

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That's focusonthefamily.com slash careers. Sarah has enriched my life and the lives of others in wonderful ways. Her life is meaningful and full of purpose. The hundreds of other special needs parents I've met along the way, they tell me they feel the same. The world is a better place because of our children. Well that's Shawna Amick describing her beautiful daughter Sarah who has Down syndrome. Today on Focus on the Family we're gonna hear about Shawna and Sarah's remarkable journey and how God kept showing up in their lives.

Your host is Focus president and author Jim Daly and I'm John Fuller. John, I wonder how many people know that today March 21st is World Down Syndrome Day and which is a day of celebration and global awareness officially observed every year by the United Nations since 2012 and this is a growing global campaign to advocate for the rights, inclusion, and well-being of people with Down syndrome. But ironically we completely disregard pre-born babies who have been identified with this particular disability. It's estimated in the United States that 67% of pregnancies with a Down syndrome child end in abortion.

67% and in some European countries it's as high as 90%. That is really sad and I mean any abortion is tragic, it's heartbreaking that so many in our culture though are looking at these precious lives saying doesn't matter, not valuable, even though these are babies created in God's image. Absolutely it doesn't mean there's not hardship, there will be, but how do you become more like Christ right there within your own family?

Here's the thing John, God doesn't make mistakes. There are going to be obstacles in a world that is full of sin and has fallen away from God but we can quickly see those imperfections in someone with Down syndrome or some other physical or mental disability and maybe we judge them or we pity them for the condition they're in. But God often does his greatest work through our weaknesses right and where there is a mess God has a greater plan of purpose that's far beyond what we can imagine and that's been the experience of our guests today and I'm looking forward to discussing this issue with her. Yeah Shauna is an author, speaker and disability rights advocate. She's the director of radio marketing for Johnny and Friends, the ministry founded by our good friend Johnny Erikson-Tada and Shauna is the mom of three and she's a contributing author to a book we're offering today called Real Families, Real Needs, A Compassionate Guide for Families Living with Disability. And then Shauna has captured her own personal story in a little booklet My Baby Has a Disability Life Giving Questions and Answers and you can learn more about these resources by clicking the links in the episode notes. Shauna welcome to Focus on the Family. Thank you for having me I'm so happy to be here.

Yeah we're recording in Southern Cal at our good friends here at Ambassadors Conference Room actually it was nice of them to make this available to us. Shauna I understand you've been a pro-life advocate for more than two decades and you also worked with pregnancy resource centers. By the way let me give that unabashed plug for pregnancy resource centers. You want to get involved in your community? Call them up and see how you might volunteer or help them, certainly support them financially.

The PRCs deserve that kind of local support and they're in your community. I am almost sure that they're there for you. So you were doing that and in 2005 your pro-life convictions were tested. How were they tested? Well I ended up being pregnant with my third baby and went in for what I thought was going to be that routine ultrasound where you get to find out if you're having a boy or girl and I'm confessing that was about the extent of my vision for the day. I wanted to know what color I was going to be painting the room when I got home and as I laid on that table and the ultrasound technician took longer and longer to look at this baby growing inside of me and then settled on my baby's heart and stared at the ultrasound image of Sarah's heart for close to 45 minutes and with my untrained medical eye I knew we had a problem.

Yeah you didn't know quite yet. I really had no idea what the problem was but I knew that I had I had had two children already. I knew we didn't take this long doing an ultrasound and I knew enough about the human heart to know that there were supposed to be four chambers in it and Sarah had no chambers in her heart. It was a circle with a little piece of tissue that would kind of float around every time my heart beat and I asked the technician when are you gonna tell me and she said oh I'm gonna have the doctor come in and see you and the doctor sat in front of me and told me that my baby had what was called an AV canal heart defect and that that specific heart defect was a red flag for Down syndrome. She then told me about all the other markers that she saw through ultrasound and immediately offered an abortion and at that point I couldn't really speak I just shook my head no. Let me ask you though in that moment when when a medical professional I mean obviously you're going through trauma and you're getting all your fears confirmed and things you may have even had mommy's intuition about right and then they say yeah we would highly recommend an abortion.

What flows through your mind at that point? This is gonna sound ridiculous but I was kind of sitting with my arms crossed and I literally pinched my arm it just didn't feel like reality yeah I don't know that I could tell you in the moment there were a whole lot of thoughts going through my head other than no but after the fact very soon after I left the office I just started praising God that I knew the truth of Scripture that all life is sacred. It was actually Psalm 16 that God gave me and carried me through the next five months of that pregnancy specifically the boundary lines have fallen for me in pleasant places and I have a delightful inheritance and you know I would drive by I mean we were in the hospital all the time after that throughout the rest of the pregnancy it became a high-risk pregnancy. Sarah was born on a beautiful June morning and just quickly started dying as they told me because of her heart defect and it would be six weeks until she was strong enough to have the surgery itself and then another two months of staying in Children's Hospital in Boston recovering and so every day I would see other moms with healthy babies no heart defect no disability and God would just remind me the boundary lines have fallen for me in pleasant places too. Yeah but even in that I mean there's there's that immediate faith response that you had which was a good step in God's direction did you at some point in that journey begin to say I'm not feeling close to the Lord I you know did you have moments where you were struggling? I had moments of struggling with Sarah's diagnosis I certainly had a lot of fear that on this side I think what was I afraid of right but were you afraid what was I afraid of the unknown yeah and I think difficulty of it sure challenge it would be and I think even that is part of how our culture kind of indoctrinates us to think that people with disabilities are somehow less valuable because what would be there to fear in Down syndrome I can say that today right 16 years ago I was terrified I didn't know what this would look like so I'm grateful that it didn't shake my faith it totally shook my core I can say that and I had a lot of questioning the Lord why why would he do this to my baby why would he do it to me and three months later after open heart surgery after everything that she had to go through at in the NICU and the Children's Hospital and I was finally told I could bring my baby home I I said well I'm gonna go for a walk before I put her in the car that made everybody nervous I don't know if they expected me to come back or not but I had it out with the Lord can I say that I said what happened to the bread I asked for why did you give me this stone and about four miles into my walk I really heard the Lord say you were asking for a stone I gave you the bread and it just about knocked the wind out of me and I I walked in I said okay I'm ready I'm ready let's go I took my baby home I set up her little hospital room right next to my bed and and we've been doing life together for 16 years now yeah but yeah I so appreciate the vulnerability of what you are struggling with because you know women are listening right now who are maybe facing all kinds of things that are challenging their faith it may be a diagnosis of their preborn child and what's happening and the fears of that and it might be difficulty in their marriage it could be a whole host of things so I do appreciate that honesty and to the blackness of your heart we all have sin in our heart right so we're all gonna have doubts and fears that's part of being in this life but it's so amazing when we choose faith in Christ no matter what form that takes right because I really think it puts a smile on his face when we trust him you you had a couple of experiences that really helped bolster you what you called kind of the I would call God incidences coincidences that occur one was where you were in a fast-food restaurant and something happened what was that I was yes okay well I had been crying for a good many weeks at that point and I had my two older children Veronica and Gideon Veronica was six and Gideon was four and we lived out in the boondocks okay so there wasn't a matter of getting in the or going out the front door and going for a walk to see people I had been kind of housebound living out in the woods with these kids and I just had a little bit of cabin fever and thought okay that's enough crying for for now and let's pack up and we're gonna go do something crazy and go get some fries right that is crazy well could I come I like fries I packed up the kids and we headed into town and parked ourselves and got our you know chicken nuggets and fries and just started being normal people for a moment and I don't know if I lasted maybe 20 minutes and then I just you know had another episode I looked out the window and just started crying again and this lady all of a sudden I can feel her hand on my shoulder and she just tapped me on the shoulder I looked up and she said honey I don't know what what's going on right now but you know I just want you to know it's gonna be okay that my friend and I are praying for you and we want you to know everything's gonna be okay now that would have been enough but when she pointed to her friend it was a young man with Down syndrome oh my and she had no idea I mean she knew I was pregnant she could see that she had no idea what I was crying that's amazing I feel like like that Lord was one of those be careful how you entertain strangers right they could be angels yeah so another God incident was listening to the focus broadcast oh my goodness oh yes that's when the Lord turned my car into this holy sanctuary happened okay another day where and of course this is I lived in New England it's cold right so again we're not going for a walk what can we do I got to get out of the house I packed the kids up we're gonna go to the mall this beautiful God moment where I look in the backseat as I pull into the mall parking lot and the two kids are asleep right that in itself you know and so I thought well I'm gonna let them sleep I'll just listen to the radio and here comes focus on the family and you know I'm not quite remembering word for word but it was something the intro was something like have you been diagnosed with an adverse or have you had an adverse diagnosis in your pregnancy well stay tuned because this show is for you yeah well and do you know that those two kids stayed asleep for that whole program so I could sit in the front and have focus on the family minister to me and truly I truly did feel like that car just turned into God's holy sanctuary just speaking to my soul yeah that's beautiful Wow well what a privilege to be a part of your story and thousands and thousands of others this is focus on the family I'm John Fuller and we've got Shauna Amick with us today and she has contributed to a book real families real needs a compassionate guide for families living with disability we've got copies of that here at the ministry just call 800 the letter a in the word family or stop by focus on the family comm slash broadcast Shauna you really identify with an Old Testament character I I think those that know the story of Hagar would put the pieces together but explain Hagar her travails and how you identify sure sure all right well people are gonna want to read Genesis 16 to get the the whole Hagar story of course but she's the outcast who's just feeling rejected and and far from the Lord and I didn't really identify with Hagar until the night before Sarah's open-heart surgery when for those first six weeks of Sarah's life she had been connected to all kinds of life support and we knew that open-heart surgery was waiting for her in the morning and so I set myself up for this all night prayer vigil and Sarah's hospital room and right around midnight her nurse came in and started unplugging her from all of these life support machines and of course I was flabbergasted because I had been told for six weeks she can't survive without this before I could say anything her nurse picked Sarah up out of her little hospital crib and put her in my arms and said I think you and your baby should go for a walk and I was about to ask and she said just don't leave the hospital and be back in 20 minutes and it was all in her eyes I had 20 minutes before you know it would affect Sarah's health and not being connected to life support so kind of like a zombie even I went on autopilot down the hall and I got in the elevator and in a very childlike way I wanted to get as close to God as I could so I pushed the top button in the elevator not knowing where I was going to land I really had not left Sarah's room for those first six weeks well the elevator door opened and what was waiting for me was floor-to-ceiling glass windows overlooking the Boston skyline at midnight it's quite a fascinating scene and I ultimately felt very small like here I am and with millions of other souls all of us needing the Lord and who am I and I'm holding this dying baby in my arms right the only prayer I could squeak out was the name of the Lord and so I just said Jesus and I I felt in that moment that God said to my heart I see you I see you and I see that dying baby in your arms and you know Sarah still had Down Syndrome she was still gonna need open-heart surgery in a matter of hours we didn't know if she'd survive it that was the whole reason that that dear nurse let me go for a walk with my baby it was the only time I ever held her without many tubes in between us but what changed in that moment is I was no longer the outcast I was no longer rejected or I did not feel far from the Lord he saw me right he saw what we were going through and it completely changed my perspective and gave me the the strength to go into surgery the next day yeah that's a wonderful story of how the Lord will encourage us do you think in that circumstance do you think the Lord would do that for everybody and sometimes we just miss it oh I mean I tend to lean that direction that it he's there but sometimes we're so lacking being in tune with him or even having a heart open to him that we'll miss those moments where he's expressing yeah yeah well you know what I always I fully believe God speaks our love language right so for some of us it's words other times it's maybe he shows us something in nature a hand on the shoulder exactly right and we do need those eyes to see so I mean this is gonna sound really very simple but that's why we've got to stay so close to him right in the word and in prayer I would have missed it otherwise it tell us about your daughter today oh my goodness I'd love to yeah and it's what have you seen all those fears you've alluded to this earlier that if you know now I don't have those fears I you know it's not there what you've learned so that's what I want to hear what have you learned okay what have I learned I have learned the truth of the sanctity of life and believe it or not every night when I'm praying over Sarah as we go to bed I am thanking God that she has Down syndrome because she would not be Sarah she wouldn't be Sarah any other way so the very thing that completely threw me into a panic is what I am able to thank God for now you talked about princess dancers right Sarah of course means princess so she's my princess and I'll tell you what that kid can dance so she loves music she loves dancing her favorite artist is Elvis of course mine and she does a fantastic Elvis impersonation so any chance she'll get she'll put on her Elvis outfit and and grab a mic and and do a little dance for us you know she's just everything wonderful she's got every emotion that everybody else does which is actually something that maybe somebody listening doesn't understand folks who don't have friends or family members with Down syndrome will sometimes say to me oh isn't that great your your daughter has Down syndrome that means she's always happy right which personally it's a little insulting because it's almost taking away her humanity like well no she's a person she's got all the same emotions you have so she's happy and she's sassy and she's fun and she gets angry just like me and she loves Jesus in fact you you mentioned in the describing of Sarah her ability to pray oh she's a prayer warrior again that would surprise some people because we assume that cognitively that connection may not be strong but how does she pray oh you know Sarah is 16 years 16 years old at this point her language is getting more and more understandable I of course can understand her but I'll tell you what if there's ever a chance when the pastor or anybody asks for a volunteer to pray she's always going to be the first to volunteer and there have been plenty of times where the rest of us all we understand is dear God and then Sarah will just let loose and she is you know calling down heaven and at the end you hear amen now none of us might even know what she just prayed but I promise you Jesus knows what that little girl prayed and I think it makes him smile so awesome and even for some people to hear what you said a moment ago that you know your daughter with down syndrome that you sound comfortable with that might even make them uncomfortable that you would be comfortable with that right and I think the last question I wanted to ask you is just with that transformation that you've had moving from what what has happened to me Lord to acceptance and then you know today you wouldn't want to do over that's right that's powerful some people be totally confused by that yeah you know I think that's what I always want moms to hear when they've been given a diagnosis whether it's down syndrome or any other kind of disability or adverse diagnosis as I remember from my focus on the family broadcast there you can do this right don't don't let the world tell you that there's something wrong with your baby there's nothing wrong with your baby God's hands knit that baby together in your womb exactly the way he designed right so I guess if there was any do over it would just be I wish I was a little stronger when I went through it but certainly wouldn't change a thing about Sarah and and that's what I want other parents to know that if they go through that initial of course it's a crisis of course there's tragedy of course there's trauma right we wouldn't be human otherwise if we didn't have any of these emotions but once you get on the other side you're gonna praise God that your baby is exactly the way God made that baby you know Shawna it strikes me that in this day and age that mama's heart for her child it comes out so boldly in you and even if in the beginning you didn't feel it you know you had to work through it and I so appreciate that but that mama's heart you think in our culture today with what I perceive to be just an all-out war against children to be honest with you and so that I'm pointing that out in that you know when you look at that it's just beautiful to see that you can embrace what is and that you can trust in God and so many of us need to do that more so right with regardless right as you said earlier regardless of our our situation I'm grateful the Lord trusted me with her right I consider that an honor yeah you know if I can speak to the mama's heart can I absolutely it looks different depending on who I'm talking to so and perhaps this will make sense I hope it will sometimes I'll have a little child you know a child come up and kind of be staring at Sarah and I love this one scene where we were at a playground and a little boy not only was staring at her but he finally came up to me and said what's wrong with her and in that moment my heart was just so tender because I saw this is a teachable opportunity well you know what there's actually nothing wrong with her you know she thinks a little different than you and maybe she talks a little different than you but she loves the slide just like you do she loves to swing and you know this little guy I don't know maybe he was five he he kind of thought about that and he said okay and they played together for the next 20 or so minutes that was a wonderful gift I kind of get the other extreme I can get a little mama bear when sometimes I might have an adult who thinks there's something wrong with my child and you know shame on me I should have the same attitude and and see it also as a teachable moment but I'm just gonna I think this is the time for confession on this focus on the family yeah and there's nothing wrong with her you know I mean I've had moms kind of pull their children away from mine as though they think they're gonna catch Down syndrome and that just breaks my heart so I guess if there's anyone in a minivan right now listening to this think about that mom of a special needs child and give her a little grace and mercy and realize that her child is just as valuable as yours that's a good word for all of us actually Shauna this has been so good thank you for sharing your heart thank you for having lessons learned and the good things I hope you know the listeners and the viewers I hope you've caught the heart of what we're talking about today that if you've received that adverse diagnosis or maybe something else is happening in your life that is adverse we have caring Christian counselors who can talk with you and even refer you to a counselor in your area if you feel that is your next step so call us and this is humanity in all of its goodness and all of its darkness and what you're going through is certainly something we'd love to talk with you about plus we have resources for you including Joni Erikson Todd is great book that Shauna was a contributor of John what is that that is called real families real needs a compassionate guide for families living with disability and as you said Jim Johnny is kind of the main author and editor for this great resource and as always we are a listener supported viewer supported ministry here at focus on the family if you're able to make a contribution of any amount today we'd love to have you join the support team help us make broadcasts and resources available to families in need it's very simple to donate on the phone 800 the letter a in the word family or just click the link in the episode notes and on behalf of Jim Daly and the entire team thanks for joining us today for focus on the family I'm John Fuller inviting you back as we once again help you and your family thrive in Christ